ILFA Calls for Budget 2027 Action to End Geographic Inequality in Lung Fibrosis Care

ILFA seeks €8.2 million investment to improve access, affordability and outcomes for people living with lung fibrosis

Dublin, July 2026 – The Irish Lung Fibrosis Association (ILFA) has called on the Ministers for Health and Finance to build on the progress achieved in Budget 2026 by investing in equitable, nationwide care for people living with lung fibrosis as part of Budget 2027.

Lung fibrosis, also known as interstitial lung disease (ILD), is a progressive, life-limiting condition that causes irreversible scarring of the lungs, leading to severe breathlessness, chronic cough, fatigue and declining mobility. An estimated 5,000-6,000 people in Ireland are living with the disease, yet access to essential services remains heavily dependent on where a person lives.

In its Pre-Budget 2027 Submission, ILFA is seeking targeted investment in patient supports, implementation of a new national clinical framework, the development of a national ILD registry and measures to reduce the significant financial burden faced by patients.

The organisation is calling for:

• €302,000 to continue and expand ILFA’s multidisciplinary patient support programmes, including its ILD Nurse Advice Line, Virtual Pulmonary Rehabilitation Programme, exercise classes, psychological counselling and nutrition support.
• €141,500 and 0.4 WTE HSE resources to lead implementation of recommendations arising from the National Framework for Interstitial Lung Diagnosis and Care in Ireland.
• €87,100 and 0.9 WTE HSE resources to establish a pilot National ILD Registry.
• €7.7 million in patient affordability measures, including medical cards for all ILD patients and tax relief for oxygen-related electricity and travel costs.

The submission follows the landmark allocation of €500,000 in Budget 2026 for lung fibrosis services, which has already delivered significant improvements in patient care. During the first six months of 2026, 134 patients enrolled in Virtual Pulmonary Rehabilitation, more than 180 patients received support through the ILD Nurse Advice Line and patient satisfaction with the service reached 4.92 out of 5.

However, growing demand has already resulted in waiting lists for some services.

“Budget 2026 demonstrated what can be achieved when people living with lung fibrosis are recognised and supported,” said Maureen O’Donnell, CEO of ILFA. “We have seen tremendous demand for services that help patients manage their condition and maintain their quality of life. The challenge now is to ensure these improvements are not lost.”

Despite recent progress, significant gaps in care remain. ILFA research has found that 75% of people surveyed had never been offered pulmonary rehabilitation, while more than 40% reported rationing oxygen because of cost and delivery difficulties. More than 80% expressed concern about the impact of oxygen therapy on household utility bills.

The organisation says the HSE’s National Framework for Interstitial Lung Diagnosis and Care (currently pending publication) provides a roadmap for addressing longstanding inequities in access to specialist nursing, pulmonary rehabilitation, psychological support and palliative care services. Dedicated implementation funding is now required to turn recommendations into meaningful improvements for patients.

ILFA is also advocating for the creation of a National ILD Registry, arguing that accurate and timely data is essential for service planning and resource allocation. Although an estimated 5,000 to 6,000 people are living with ILD in Ireland, there is currently no national system to accurately track patient numbers, disease burden or care needs.

In addition, the association is urging Government to address the financial pressures faced by many patients. Oxygen therapy and associated electricity costs can place a significant burden on households, forcing some patients to ration treatment despite its critical role in maintaining mobility and reducing hospital admissions.

“Our goal is simple,” said O’Donnell. “Everyone living with lung fibrosis in Ireland should have access to the right care, in the right place, at the right time, by the right person, regardless of where they live or their financial circumstances. Budget 2027 is an opportunity to make that vision a reality.”

Read the full budget submission here: ILFA 2027 Pre-Budget Submission – July 2026

ENDS

For media enquiries: Maureen O’Donnell
Irish Lung Fibrosis Association (ILFA)
+353 (0)1 5922501
info@ilfa.ie
www.ilfa.ie

Notes to Editors

• Interstitial Lung Disease (ILD), often referred to as lung fibrosis or pulmonary fibrosis, is a group of progressive lung diseases characterised by scarring of lung tissue.
• An estimated 5,000 to 6,000 people are living with ILD in Ireland.
• ILFA is Ireland’s national patient organisation supporting people living with lung fibrosis and their families.